October is national Eczema Awareness Month, so this edition of “Story Behind a Story” looks at the one time I wrote about the condition in a very public place. (For more information, visit www.nationaleczema.org)
The Story: “Waking Up with Eczema,” The New York Times, December 15, 2011.
The Concept: I developed eczema when I was eight years old. Since then, a good portion of my life has revolved around either coping with the symptoms or trying to stop them before they started. It’s a painful, distressing, disfiguring condition. I had a major outbreak in August 2011, and when I tried to explain to those around me why I was in so much pain, they couldn’t understand, asking things like “Why would a rash hurt?” I wanted to scream.
Around that time, I was also casting around for running-related topics to write about for the New York Times Well Blog. But when I sat down to compose pitches, the only thing on my brain was eczema, for two reasons. First, someone chided me on Facebook when I posted about medicine for eczema, and it pissed me off. Second, I’d just come back from the doctor’s appointment where I found out that the outbreak was infected. I wondered if Well would consider covering the topic. There, at the top of the page, was a post about an eczema study.
The Pitch: “I saw the post about eczema today. Very interseting – and timely as I was just going to write you about that topic.
I’ve had eczema since I was 8. For those of us who carry it into adulthood, it is an incredibly frustrating and at times painful condition. It’s very hard to pinpoint the cause of outbreaks. I’m going through one right now that ended me up at my regular doc’s office (would have taken months to get into the dermatologist) because I was bleeding and it turns out, it was infected.
A couple of angles:
-How people cope with an untreatable condition.
-Coping with a non-life threatening but still painful – and potentially embarrassing – condition. One of my outbreaks right now is on my eyelids. I’m amazed at how many people have come up to me and asked me what’s wrong with my face. Also, if I had a dollar for every person who told me if I just relaxed it would go away…
-Why it’s so hard to find good doctors to treat this (most derms also do cosmetic stuff like botox, so we can be pushed out of priority)
-And then there’s the essay angle: This is the first time I’ve had a big blow out outbreak in six years. If I hadn’t been able to get into see my family doctor, I’d have gone to the ER. I’m on an antibiotic, steroid pill and steroid cream now. My doctor also suggested that I go to the beach (sunlight and salt water can help). I jokingly put a comment about that on facebook, which eventually lead to sharing the regiment of medicine I’m on. And I was shocked at how one person started haranguing me about how what I was doing was wrong, how using a steroid cream would only make it worse, how I’m uneducated about eczema, and how I should just wait it out and it will get better (she
said she once had eczema on her face so she was apparently an expert at this). I was so pissed off I couldn’t sleep last night, writing in my head what I wanted to say to he about what a difficult decision it is to use a steroid cream and antiobitic knowing the side effects, but I really did want to stop bleeding, itching and infection from
spreading to the rest of my body. I think there’s something in here about armchair doctoring, especially the more we share on facebook and twitter. I normally wouldn’t have said anything, but I write about the Jersey Shore and thought it was funny that my doc would “prescribe” for me to go to the beach. I ended up deleting the entire thread. I can try to flush that out more if it’s of any interest.
There is a new pill treatment for eczema, but the side effects are a little scary. There’s also a great cream called Elidel – but it now has a strong black box warning from the FDA about causing cancer. Fun!”
The tone is casual because I’d written for this editor before. Also, I offered different angles because I wasn’t sure which way he’d want to go. This is a common pitching technique. Sometimes the initial angle won’t work for your editor, but a different twist would. I offer those twists to up the chance of assignment.
The Process: My editor asked me to write it as a first person patient experience. At first blush, I didn’t know if I could do it. The topic was so painful and personal and NOW. So I put on my baseball hat (which I do when I’m working on difficult projects), kicked the dog out of my office, and wrote…and wrote and wrote. I let out every single though and feeling and experience I’d ever had with eczema. I sobbed the entire time. It was a terrible experience – I felt vile and disgusting because that’s how eczema made me feel, and I had to confront those feelings.
That was the first draft. I printed it out, put it in a binder, and left it for 48 hours. I went through 12 more drafts this way: print, red pen, input changes, let it sit. Through those drafts, the brain dump became an essay. A reader commented that she was startled how I could write about something so obviously personal but with a clear head. I only came to that point on the twelfth try.
I didn’t feel that the piece was finished when I turned it in to my editor a month later, but, I sent it in with a note that I wanted him to look at it and tell me if I was moving in the right direction. This is the sign of a good editor, that he or she wants to collaborate with a writer who’s stuck. My editor ended up making very little changes, and the piece ran on the site in December.
I have never received so many comments and emails about a story. Most were from other suffers, who thanked me for giving words to their plight. Many were from people who wanted to again offer treatments that never worked for me, but that’s okay. I know they were only trying to help. I was invited to do a segment on “The Doctors,” a Sirius Satellite Radio show, where we talked about the essay and with other patients. It was a very moving experience.